About ten years ago, a colleague told me about her mother's dementia. Her mom was in a local nursing home receiving regular care. My colleague told me that she brought her mom a doll to hold, and then went on to explain how difficult it was to see her mom like that for so many years. I heard my colleague's words and had a lot of respect for the way she was handling the situation. I also, at the time, felt some relief that I was not experiencing a similar situation in my life.
Now, ten years later, I'm in the midst of caring for people with alzheimer's and dementia. I often think back to my colleague's loving, thoughtful routine of care with her mom as I engage in these troubling diseases. At this point, it has been a long road, and one that will be longer.
It's hard to say when my mom first began experiencing symptoms of dementia. One brother relates it directly to a botched surgery that mom had many years ago. During the surgery, Mom was without oxygen for some time, and she was in the hospital after that for many weeks. I was very busy at the time with my family and teaching, and all that I remember is being there when I needed to be there and doing what I needed to do to help my dad and siblings care for my mom. Later, though, the first real incident of dementia I remember was when mom got lost in a store. Mom and I went shopping at Marshall's, and all of a sudden, she was gone. I couldn't find her anywhere. Eventually with the help of store clerks, we found her. After that, there were other signs such as receiving gifts from mom that were completely the wrong size or listening to her ask the same question over and over again. Mom's interest with and ability to care for her personal needs began to wane too. Eventually Mom had a stroke which clearly exasperated her dementia, and now with most of the stroke affects cured, Mom is left at a place where her ability to talk is minimal and her interest and ability to engage in life greatly reduced. She eats, sleeps, walks about her home, smiles and completes tasks that don't make much sense daily. There's no more conversation or ability to engage in activities together anymore, but she still appreciates a hug, kiss, smile, meal prep, special treats and tucking her into bed. And she continues to be totally in love with dad, and demonstrating her affection for him with loving looks, words, smiles and hugs.
Now another loved one is beginning to experience the affects of alzheimer's. This began slowly with small losses of memory, but now has accelerated mostly in terms of not remembering what's going on minute to minute and not being able to grasp or notice complex topics, events, or needs. What's most difficult about this and different from Mom's dementia, is that my loved one knows his memory is going, and he understands what's ahead. It is difficult to stay positive in the midst of a progressive disease like this, however, my relative remains positive, and we who love him are looking for the best ways to support him as the disease progresses. We're navigating many agencies and strategies to make life positive and happy for our loved one.
As I navigate this dementia/alzheimer's road, I must say it is very emotional. First, there is the vulnerability I feel knowing that it's likely that I may have one of those illnesses if I live long enough. Seeing others go through it makes you wonder about how you will face such struggles and what you want your loved ones to do or not do for you. Next, there is some resentment though I hate to admit that--some of the care is not enjoyable or positive at all, instead it is difficult, unpleasant work. Yet, those difficult, unpleasant tasks are part of the contract you make when you love and care for people--it is not going to be all flowers and sunshine, so when it comes to the difficult work, the best thing to do is just do it without too much thought or procrastination. There is the confusion and worry of unknowing too--I've never cared for alzheimer's or dementia patients before and there is much to understand and learn with regard to good care. There are also countless agencies to work with and financial concerns as well. It's a complex path. Lastly, though, there are joys as well. When you employ a strategy that makes your loved one feel more comfortable, smile and engage in life more fully, that's joyful. Also, to know that you are able to surmount those difficult tasks in ways that bring greater joy, love and happiness brings a sense of strength and satisfaction.
As most know, when we embark on a long, mostly arduous road, the key is to take it step by step while also having a vision of the road's end. A good routine helps me to navigate this road positively, and the vision that at the end that I will be able to say I did my best by my loved ones, collaborated with my family and lived by my values keeps me centered on this journey in positive ways. Alzheimer's and dementia are often long, arduous roads--roads most of us don't know a lot about thus creating some struggle as well as the need to learn and collaborate more to successfully traverse the path. I can do this and I will, one step after the other. Onward.